UPDATED 10/6/09
Progressive multifocal leukoencephalopathy is an infrequent disorder of the nervous system that primarily affects individuals with suppressed immune systems caused by things such as cancer, autoimmune diseases, HIV/AIDS, organ transplant medications and Crohn's disease. The disorder, which is caused by a common human polyomavirus called the JC virus, is characterized by demyelination, or destruction of the myelin sheath. The myelin sheath is the fatty covering which acts as an insulator on nerve fibers in the brain. Common symptoms include weakness, changes in behavior and awareness, mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and, ultimately, coma reflecting the multifocal distribution of brain lesions. In rare cases, seizures may occur. Roughly 85% of our population has the JC virus. We often contract it as children in the normal course of childhood and it usually does no harm. But, should your immune system become compromised, the JC virus can become activated.

Currently, there is no cure for PML. Treatment is symptomatic & supportive. The course of PML is relentlessly progressive. Death usually occurs between 1 & 4 months after onset, but there have been reported cases of survival from months to years. PML is debilitating & isolating. This group is intended to educate, support and inspire. Participants are encouraged to share ANY information related to their experience.

NEW SUBSCRIBERS: There have been MANY useful conversation threads since 6/06. Use the search function in "messages" to look for a specific topic. Although our group is here anytime to discuss anything PML related, we often get asked the same questions over and you'll likely find the best answers back when the question was first answered. If you can't find the answer to your question, aren't satisfied with the answer you found or wish to initiate a new or personal topic, please do so! Thank you! -Ron C. Moderator